Tag Archive | Chronic invisible illness

WONDER and a “real” struggle for families of the chronically ill

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The struggle is REAL, married or single, sick or healthy, rich or poor.

We all struggle with loving God with all our heart, soul, mind, and strength. Loving our neighbor as ourselves is a natural victim of war when we lose the fight in some area of loving God first.

As John Calvin, famed reformer put it, “Our hearts are full time manufacturers of idols.” We struggle with worshiping ourselves, our space, and our desires. I think chronic illness in the house has so many ways of bringing this struggle to light.

EVERYTHING in the household revolves around the needs of the one who is suffering. The meal schedule, the meal plan, the budget, the family schedule — this list goes on. Even the chronically ill person tends to expect and sometimes plain demand this type of attention, especially if they’re the husband.

Not to trample the chronically ill or special needs community. I’m an advocate. All. The. Time. However, in the recent movie Wonder, the special needs hero Augie falls prey to this trap, as does his mother especially. Everything revolves around making sure Augie gets what he needs to survive his first year of public middle school.  More than that, though, his family is already used to centering their lives around his medical and emotional needs. The oldest child’s needs are easily ignored while she struggles with the loss of her best friend.

In the end, Augie learns an important lesson. He learns to appreciate his truest and best friends and to be concerned about their needs, too. It’s a one-in-a million, good-for-the-soul movie that I could easily watch again. Hope I’ve wetted your appetite!

One thing’s for sure, God did not design anyone to find full joy and satisfaction outside of Himself.

That’s a lesson I keep coming back to over and over again. At this point in my life, I’m “almost” a single mom and definitely a full-time caregiver. There’s nothing normal about my marriage. Some of you can relate to this very well. Others, well, I understand that you can’t. That’s okay.

After the latest of multiple diagnoses were slammed in our faces, I threw up my hands and said, Okay, God. Your kingdom come, your will be done in my life in this situation. Any hope of normal is gone. Just please work for Your glory and our good as You promised to those who hope in You.

However, I’ve seen a ton of “normal” Christian marriages that I don’t envy in the least. Some of them break my heart. Again, the struggle is real.

Marriage is God’s good plan and design, but it’s easy to make an idol out of it. Like any human relationship, marriage is also easily ruined by sin and selfishness. I loved an article I read about singleness and marriage on the blog Lies Young Women Believe. There’s food for thought for married women, too. Good stuff!

Read this blog post and especially the comment section!

When life is topsy-turvy, our covenant-keeping God says, Return to me. Be still and know that I AM God.

His beauty, His love, His faithfulness, His truth, His compassions, His mercies are what keeps me going. There isn’t a friend on earth who can fathom all of our personal struggles. Not gonna happen, though we should try to BE that friend who is like our God. Full of compassion. A listening ear. A tender heart. A giving spirit. A truth-speaker. An encourager.

A prayer for Loving God

In a nutshell, my Ideal Lover is described in the words above. I want to be bound to Him by cords of love forever.

What about you? If you’re running low on love, there’s a Psalm for that. If you’ve forgotten Whom you should love best — well, there’s a Psalm for you. Whatever your real struggle, I promise you, there’s a Psalm for that, too.

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Chronic invisible illness — but you look SO good.

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My hubby had a splitting migraine for most of the week. 

He got out of the house a couple of times but for only a short jaunt. Yesterday he took all of the pain meds he could so that he could walk a few doors down the block to hear some live music.

Twice in a thirty minute time he was told how good he looked by two friends that have some small awareness of his health issues.

I really think they meant it kindly. I do. But some don’t.

They say it in a tone of disbelief. You can almost hear the thoughts tumbling around in their heads. Sometimes small remarks tumble out of their mouths, too.

Oh, you must be pulling my leg about your health issues. You’re not so bad off. Why aren’t you working, again?

 My sis in love got some similar remarks and responses. (No one really expects a stage four cancer victim to hold down a job. That’s a relief!) She was such a fighter and an upbeat person. She made a huge effort to leave the house looking good.

In fact, for most of the four years she fought stage four cancer, you would have to be around her for awhile to catch on. The joy of the LORD truly was her strength.

Being on her care team gave me an inside glance of the true nature of living with cancer in your bones. At home you tend to let your hair down, so to speak.

I saw her sit and groan softly many times through unbearable pain. Gratefully accepting a cup of tea she could barely stomach, though she wanted it so badly. Many barely touched plates of food…

For many years I have regularly seen my hubby struggle to make it out of bed for a few hours at a time. He consistently naps every day after laying in bed until late in the morning. His bones hurt every day, too.

He can look good and still struggle with a boatload of pain.

Looks can be deceiving in so many ways. Tell folks how you feel, and you’re a whiner. Put on your game face, and you’re not as ill as you’re  reported to be.

It’s an odd conundrum that many chronically ill people face and their spouses, too.

Understandably, you feel on the defensive at some of the pointed or careless remarks that get shot your way. I know I do.

I sat and listened as my sis almost cried about several folks asking her when she was due. And, are you excited about the baby?

In fact, she had already lost her ovaries to cancer. Her liver was so swollen she looked like she was starting her second trimester. But she loved her two babies like there was no tomorrow.

How do you deal with these unwitting arrows that people shoot at you?

“HE is my defense. I shall not be moved.”

I have listened to Marty Goetz’ CD, “HE Is My Defense” dozens of times in the past few months. The Scripture set to music heals the wounds. Jesus is the “horn of my salvation”. That horn can either call for help or push its point in my defense.

I need a Defender! I need a Refuge. I need the solid Rock to stand on.

Truth. I, too, have inflicted needless wounds with my tongue. If we live long enough, we all fall short in this area. Greatest. News. Ever. His wounds have paid my ransom.

Forgiveness. I need to extend grace and forgiveness to those who act like we have leprosy because of the chronic illness in our family. Or those who carelessly speak. Why? His Word is ultra clear. If I don’t forgive, it is clear I have not been forgiven. Those who forgive the most love the most like Jesus.

Understand that some folks will never “get” chronic illness. Forgive. Rest in His defending love. What are some ways you respond? How does invisible illness challenge your family?